The Most Important Health Discussion That You AREN'T Having Lisa Capparella MSS, LCSW, OSW-C May 11, 2019

Have you ever…. sat down and planned for retirement savings? discussed and planned how to care for a sick family member or friend? ______________________________________ Have you ever talked, written, or thought about how you envision your end of life?

No one wants to talk about it . . . If you don’t want to talk about dying, one thing’s for sure—you’re not alone! But let’s consider the facts . . .

56% have not communicated their end-of-life wishes Californians’ Attitudes and Experiences with Death and Dying Survey - February 2012 (n=1669) 60% of people say that making sure their family is not burdened by tough decisions is “extremely important” 56% have not communicated their end-of-life wishes

82% of people say it’s important to put their wishes in writing 23% have actually done it Source: Survey of Californians by the California HealthCare Foundation (2012)

80% of patients say they would definitely or most likely want to talk with a doctor about end-of-life wishes 7% have had a doctor speak with them about end-of-life wishes

Source: New England Journal of Medicine 2010 3 out of every 4 people are unable to make some or all their own decisions at the end of their life Family members asked to “guess” what a loved one’s decision would be were accurate approximately 50% of the time! Source: New England Journal of Medicine 2010

Preferences: 70% of people say they prefer to die at home Reality: 70% die in a hospital, nursing home, or long-term care facility Source: Centers for Disease Control (2013)

It’s not that simple…. “The leading cause of US deaths have moved away from infectious illnesses and towards chronic conditions. Many patients near end of life may have a longer disease trajectory than in the past and more time to consider their options for care.

Barriers to Discussing Wishes with a Loves One California 2012

Most Important Factors at End-of-Life

What is a living will? A living will is a document in which you can be specific about the kind of medical care you want if you become terminally ill, permanently unconscious, or in a vegetative state and . . . You are unable to make your own decisions It informs medical personnel know that you do not want certain life-prolonging medical procedures if you may die soon. It helps your durable medical power of attorney, as well as family and loved ones, understand your wishes.

Put it in writing! Advance Directive the document that describes your preferences for care in case you are unable to make health care decisions on your own. Also known as a living will. You can change this over time Not as important as “the conversation” You do NOT need a lawyer to complete this!

More Definitions Health care means any care, treatment, service or procedure, that can maintain, diagnose or treat an individual’s physical or mental condition. Health care decisions mean the consent, The refusal to consent, or withdrawal of consent to health care.

Think it, write it, or share it… how do you begin? This isn’t about dying, it is about figuring out how you want to live What matters to me? What do you value most? What can you not imagine living without?

Prepare “What matters to me is being able to recognize my kids.” “What matters to me is being able to eat chocolate ice cream and watch football on TV.” Now, answer this question to yourself: What matters to me at the end of my life is____? Examples:

What role do you want in decision making? I only want to know the basics vs. I want to know as much as I can Ignorance is bliss vs. I want to know how long I have to live I want my doctors to do what they think is best vs. I want to have a say

What kind of care do you want to receive? I want to live as long as possible no matter what vs. quality of life is more important than quantity. I’m worried that I won’t get enough care vs. I’m worried I’ll get overly aggressive care I wouldn’t mind being cared for in a nursing facility vs. living independently is a huge priority for me.

How involved do you want loved ones to be? I want my loved ones to do exactly what I’ve said even if it makes them uncomfortable vs. I want my loved ones to do what brings them peace even if it goes against what I’ve said. When the time comes, I want to be alone vs. I want to be surrounded by loved ones. I don’t want my loved ones to know everything about my health vs. I want them to know everything about my health.

Durable Power of Attorney for Health Care

But, what am I actually choosing? First, choose a medical decision maker Health care proxy = the person you trust to act on your behalf if you are unable to make health care decisions or communicate your wishes. In some states, this is called the Durable Power of Attorney for Health Care. This is probably the most important document. Make sure you have many conversations with your proxy. *Only if you are too sick to make decisions (or at any time….)

Who shall I choose to be my durable power of attorney for health care decisions? A family member or friend who: is at least 18 years old. knows you well. can be there for you when you need them. you trust to do what is best for you. can tell your doctors about the decisions you made on this form.

Selecting the “Right” Person Can honor your wishes . Has similar values to you (in terms of what makes life worth living). Can think like you. Can weigh difficult medical decisions. Can work well under pressure. Will accept the responsibility to make medical decisions with your best interest in mind.

Who may NOT be my power of attorney for health care? Your agent cannot be your doctor or someone who works at your hospital or clinic, unless they are a family member. An employee of your health care provider. Unless related to you by blood, marriage, adoption. Under the age of 18.

What kind of decisions can my power of attorney for health care make? Agree to, say no to, change, stop or choose: doctors, nurses, social workers hospitals or clinics medications or tests The use of various life sustaining machines what happens to your body and organs after you die

Who will make decisions if I don’t have a power of attorney for health care? In the following order: My court appointed guardian (with court approval) My spouse My adult child or, if more than one, the majority of my children My parent or parents My adult brother or sister

When may I change or revoke my advance directives? At any time! It is important to review your documents periodically to ensure they are consistent with your current values and so that they are consistent with current medical technology.

Review your ACP- 5 D’s Disease/ Diagnosis Decline in your health Decade – Every 10 years Divorce- or any changes in relationships Death: deaths that impact your opinions

What should I do with my completed ACP Document? Make copies of your completed ACP for your family, friends, Health Care Agent and doctor Discuss your wishes Keep it available (in your top drawer, not your safe deposit box) Review it periodically

Questions to Think About What questions should I talk over with my loved ones when considering a living will?

My life is only worth living if I can: talk to family or friends wake up from a coma feed, bathe, or take care of myself be free from pain live without being hooked up to machines Other:_____________________________ My life is always worth living no matter how sick I am

If I am dying, it is important for me to be: At home. In a nursing home. In the hospital. I am not sure.

What should my doctors know about my religion or spirituality? Particular prayer or sacramental desires? Dietary requests? Modesty requests? Rituals upon illness or death? Who can touch your body, when? Other?

If I am so sick that I could die…I want my doctors to: Try all life support treatments that they think might help. If the treatments do not work and there is little hope of getting better, I want to stay on life support machines. Try all life support treatments that my doctors think might help. If the treatments do not work and there is little hope of getting better, I do not want to stay on life support machines.

If I am so sick that I could die…I want my doctors to: Try all life support treatments that my doctors think might help but not these treatments: feeding tube CPR dialysis blood transfusion breathing machine other treatments_____________________________________ I want ____________ only if ___________. I do not want any life support treatments. I want my health care agent to decide for me.

A Few Additional Questions to Ponder: What do you value most about your physical and/or mental wellbeing? What are your fears regarding serious illness or end of life? Would you want to be sedated if it were necessary to control your pain, even if it makes you drowsy or puts you to sleep much of the time?

A Few Additional Questions to Ponder: Would you want a hospice team or other palliative care available to you? If you could plan today, what would the months of your life look like? Last weeks? Last days? How do you want to be remembered? Legacy projects?

How to start the conversation? National Healthcare Decision Day: April 16th TheConversationProject.org EngagewithGrace.org (One Slide) GoWish.Org (Prioritize Wishes) Commonpractice.com – Hello Game PREPARE Engage with Grace: One Slide

Answer these questions for yourself: What do I understand about ‘the big picture’ of my illness? What are my goals if my health worsens? What are my fears? What trade-offs am I willing to make? Not willing to make?

Feel empowered! Talk to your healthcare team Your goal isn’t to be an expert on the medical treatments (or have a loved one become an expert) You are an expert in your goals and values Medical professionals can be the expert in the disease and treatment options

Feel empowered! Talk to your healthcare team “Can you tell me what I can expect from this illness? What is my life likely to look like 6 months from now, 1 year from now, and 5 years from now?” “What can I expect about my ability to function independently?”

Feel empowered! Talk to your healthcare team “What can I expect to improve (or not improve) if I choose this course of treatment, or another course of treatment?” “What is the best I could hope for if I choose this and what is the likely outcome if I choose ____” “What would I expect if I choose to do no interventions?”

Tips for success Start the process before it is ‘a crisis’ Aim to talk about this with your doctor at an annual visit Bring your appointed decision maker with you. Ask a lot of questions. YOU DON’T HAVE TO DECIDE ANYTHING RIGHT AWAY.

Resources The conversation project http://www.theconversationproject.org Prepare for your care http://www.prepareforyourcare.org Five Wishes http://www.agingwithdignity.org/5wishes.html Consumer’s Toolkit for Advance Care Planning www.abanet.org/aging Hospice and Palliative Care Organization CaringInfo.Org